Deteriorating from My Disease: One Young Woman’s Painful Life with Tarlov Cysts

Stacey lives with Tarlov Cysts, of which the incidence rate is unknown.

When doctors found three cysts growing on my spinal nerve roots, by my sacrum, they said not to worry as there was nothing they could do for them.  So, I thought nothing of them; yet, I was having very sharp sciatic pain that traveled down my legs.  Four neurosurgeons later, Dr. Kabins in las Vegas, NV stated my tailbone was severely shattered and I needed to have surgery.  I was scheduled for September 2008.  I spent five and one-half hours debating on whether or not this surgery would help, thinking I was going to be fine.

My pain and walking abilities became worse, so I decided to look back at my MRI from 2007.  I noticed it read Tarlov cysts, so I googled the term and found descriptions of similar symptoms I too was suffering from.  I requested another MRI and received my report two days later, which showed my cysts had grown from 15 mm to 20 mm (about 1 inch in size).

Since that time, I have learned these cysts erode your nerves and bone, and there are only three neurosurgeons in the United States that will do surgery to slow the progression of this disease. I had to file for SSI (Social Security Income) due to obvious reasons.

I feel like a prisoner in my own body.  I awake each morning with muscle weakness, shortness of breath and pain. At what seems like forever ago, I was a very outgoing person; now, I can only handle sitting for about five minutes, and I have intermittent periods of having to either stand or lay down. And where I used to be able to jump and run, I walk with a cane or arm crutches.

I recently learned from the Dr. Frank Feigenbaum from Dallas, TX, I would need two surgeries as my pelvic area is full of them. However, he is concerned about the Tarlov cysts around my sacrum bone as they have started to erode the bone away along with the nerves in my spine. The surgery will require four to five hours, a hospital stay of at least four days, and an extra eight days in Dallas as well as 18 months to heal due to the slow the progression of this disease.

I can no longer work, as I am just deteriorating.  So, in the meantime, I am eagerly waiting to get approved for SSDI and continue to have Hope.

Thanks for listening.

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Global Genes Comments

  1. Karin Ward says:

    Try Dr. Ricca in Searcy, Arkansas. My L4-L5 are fused, I also have a cyst on my sacrum, when I ask about the cyst that showed up on my MRI he told me this surgery was much more complicated, so I’ve waited. He travels the world educating himself and has even invented some surgical devices for back surgeries. You may wait 4 hours for your appointment, but when he sees you, you will get however much time is needed!!! I actually had to wait for my surgery because he was going to Paris and Germany in order to train with other of the world’s best!

  2. I am suffering everyday like everyone else has posted. I’m so sorry for all of us going through this. I found out about my tarlov cyst from a ct scan. I need to find a Dr in Florida to do an Mri. I keep reading about these horror stories that this is rare and not many doctors are knowledgeable. Has anyone found a doctor in Florida? I am desperate to find help. Thank you for any info you can provide. God Bless

    • I lived in Orlando, before moving to Georgia. My primary ordered my MRIs; however, I couldn’t find a neurologist or neurosurgeon who would/could help. I did find a pain specialist who was willing to treat the symptoms. Sadly, that’s sometimes all they think they can do… I hope you find someone soon!

  3. I have lower back pain. My MRI report showing 8*6mm perineural cyst at S2-S3, also diffuse bulge of L4-L5 and L5-S1 IV discs intending thecal sac and neural forminal narrowing. I was having very active life style before this pain but now I m fighting with the pain. A neurosurgeon advised me to undergo a surgery, but I just want to avoid surgery. Can anybody tell me that , is the surgery only option? Any alternate treatment? How much are the chances of surgery success? It will be a great help for me. Thanks to all.

    • I have the exact same thing Satya, literally right down to the size of the cysts. I’ve been told by my neurologist and internal medicine Dr that there’s nothing they can do. That most the time they don’t hurt. But I’ve had pain for 11 yrs and neural issues.They are just getting worse. It effects my whole body. I don’t know what to do any more. I’ve been through 2 pain clinics and so many therapies that just cause me more pain. And I’ve been told that the therapy is not causing me more pain. That was before they discovered the 2 cysts.

  4. Thank you for sharing your stories. I too am in quite a rough spot. I was a dancer for 20 years, and retired in 2007 when they found 2 TCs in my S3 and S4 of my spine. I then began teaching. In 2013 they had begun to erode my tailbone, and I had to retire at 31 years old. Now, in June of 2016, they are 3cm each, causing paralysis of my urinary system, digestive system, effecting my reproductive system, I’m falling frequently, having horrible pain and numbness in my legs and tailbone region, as well now I am in acute renal failure due to the urinary system being effected. I live in Atlanta, GA and my last hope here of surgery is September 19th. I’ve begged every neurosugeon I can find, but no one wants to take it on…I just want my body back. Thank you all for listening, understanding, and relating to what I am going through. May there be more education out there for neurologists, so we as patients, don’t become as far gone, before they send us for help…

  5. Can’t believe I found u all. I had neck surgery, then hip replacement then psoas tendon release. After that I felt like I was getting the flu every day, at first it was off and on now it’s 24\7. Can’t bend walk stand or sit very long. Or it gets worse. Today the found a TC. On low spine. I was hoping for a herniated disc to be honest…Tarlov. cyst…whoda. thunk. It. So bursting it is our only hope…wow. OK JELLO TIME.

  6. this is really painful story, I pray to god and believe in god. he will set everything right

  7. Sound painful.

    • Beth. Just wondering how u doing today?? And if there is a specific diet or formula with the Jell-O. And vitamins

      Thank you.

  8. I’m so sorry to read about all these Tarlov Cyst problems. My heart goes out to OP. I just wanted to offer some hope to sufferers out there. I have had a TC burst on me recently. The pain had been mounting for months. To cut a long story short, I accidentally tripped over, the result was my pelvis jerked suddenly. Since then, the pain was markedly decreased. Later that day, I got a really bad headache and then, when the headache subsided there was all this horrible gunk coming out of my nose, I have never had that kind of stuff leave my nose before. The gunk was also full of blood, eventually running clear, then thickening up every morning. I have needed to insert a q-tip with coconut oil each morning to clean out the dried blood and mucous. Because so much of it came out on that first day, I know this sounds horrible, but I was able to smell it and it smelled of dissolved gelatine. This is no coincidence because I have been following a strict healing diet for about 7 months. I have been eating gelatine, both from bovine and porcine sources, once a day for 7 months, with plenty of fresh vitamin C (oranges and grapefruits). Because the headache stopped after say 2 hours and because this gunk continued to exit from my nose for about 10 days, I’m pretty sure that I was able to heal the rupture myself, because my body had a continuous supply of gelatine in my diet. I’m so pleased to say the pain in my back has improved every day and I am now in a position, 3 weeks later, to say that I can finally do all the things again that I had been unable to for about 10 months e.g. crawl on the floor, cut my toenails and squat and kneel, willy nilly. It turns out that you need lots of gelatine in your diet in order to make natural Fibrin (derived from thrombin). Which is a non-globular protein. Various other ailments of mine have also healed since following this diet e.g. RSI of the index finger and wrist, shoulder and neck pain all disappeared.
    If anyone wants to email me regarding all of this, please do.

    • Hi Beth,
      I’m suffering from a Tarlov cyst in my sacrum, and your story gave me hope !
      I’ve read many stories , and you’re the only one the only one that mentions a rupture of the cyst ( something that I dream of happening to me)Can u please give more detail about the gelatin products u’ve been eating and where they can be found. Plz also update on how you’re feeling now. Ive also been diagnosed with undifferentiated connective tissue disease. Does anyone else have an autoimmune condition ??

      • I have 3 autoimmune diseases along with TCs. Celiac Disease, Graves Disease, and Endometriosis. It is rough with the fevers, joint pain, etc that goes along with AI diseases. I understand :).

        • Hi Jennifer,
          Thx for replying . I Can really relate to what you’re saying. I’m 34 yrs old ,and can barely work part time now. I’m always in pain. I can barely take care of my 5 year old son. Are you scheduled for surgery Sept.19th??

          • Please consider sharing your full story with us and others here:

            Managing Editor

          • Heba,
            I’m sorry it took so long to respond. I had my appointment on the 19th with a new neurosurgeon here in Atlanta. He was very uneducated on TCs. He said no surgery (after my neurologist said it was a must.) He said they do not usually cause symptoms, so I asked how large he’s seen before. He said about my size. A brief background: I have 2 TCs at s3 and s4 that are 3cm (that is correct) each. They have complicated my urinary and bowel systems to near paralysis. I was diagnosed with Acute renal insufficiency (headed towards failure) in August due to my urinary retention. We really need more educated surgeons out there…I think it’s going to come down to traveling 700+ miles for me. I’m 34 as well, cannot work (I was an elite gymnastics intructor/all-star cheerleading coach after diagnosis in 2007, but prior to that, I was a professional dancer for 15 years.) This disease really puts your life on hold. It’s so comforting to know there are others out there, but my heart hurts for the pain and frustration everyone else is going through. I hope we can all find answers soon…

        • Please consider sharing your full story with us and others here:

          Managing Editor

  9. On 12-27-07 I had the procedure done called Spinal Fusion with instrumentation
    The implants they used are PEEK ALIF w/Talon Screws w/Infuse. I was 34 and the back pain was unbearable, after rounds of shots after shots that just didn’t work, I’m still on pain meds, my doctor is a great doctor who wants me to get the Neuro Stimulator implanted (my old doctor recommended it) before my surgery but I was too scared about the thought of having something electrical in me all the time. I’m 42 now still in chronic pain, but I get up and have to go to work everyday, my pain management doctor wants me to have an MRI done on my hip now due to other pain besides in my back, but my insurance sucks and I just got him paid off from a procedure done in 12/14. In 2008 though when I had another MRI done after my back surgery they noticed that I have a Tarlov Cyst in my lower spine. I had asked the doctor what could be done about that and he informed me surgery to take it out could be real risky, worse than the back surgery, and if he was to drain it that it would come right back. I keep wondering over and over if maybe it’s getting bigger or not, but could that be the cause of all the pain I’m having worse right now? Any inputs from all of you would be appreciated! I’ve had so many people say you’re a hypochondriac! But let me tell I’ve told them until you feel and deal with my everyday pain (can’t do dishes without having to hunch over for a bit cause I hurt, can’t do a lot of walking because the pain gets to unbearable and I have an office job sitting in a chair all day to where I constantly have to stand up and so on) I would give any of them my pain! Not to mention it’s causing not only the hips, legs, knees to hurt but severe headaches due to it moving up to my upper back.

  10. Michelle says:

    Do you by any chance have breast implants? I found out about this disease from a lady that had BII (Breast Implant Illness), which is an auto immune reaction to both saline and silicone implants. Most women with implants will develop BII symptoms at some point in time. If you do have implants I would suggest you look up BII, there are thousands of women who got bizarre auto immune and inflamation related illnesses all connected to the implants. I had them removed May 6 and felt an immediate relief. Some people arent so lucky, they waited too long not knowing what the problem was. Good luck.

  11. Shana,
    I can totally relate I go between using a cane to using a chair due to pain. I have been this way for 20 years (a chiropractor broke my neck ). The last MRI I had revealed the cysts but the doctor didn’t feel the need to tell me even though I am suffering 90% of the symptoms. I only learned about them yesterday at the pain clinic when I showed her the swollen mass just above my tailbone.

  12. Shana,
    I personally wanted to thank you. I was also diagnosed with tarlov cysts just recently and has been causing my life to be a living hell. While not as severe as what you have explained, I do have ALOT of the issues you have explained here in your story. I just wanted to thank you and let you know you are not the only one having to fight with this.

  13. I have been told I have Dural ecstacia and have also been told I have tarlov cyst. I have the exact same symptoms as Tara L. I am also a Marfan’s Syndrome patient. What do I have??

  14. I am 18 years old and recently got into a car accident. After a month of going to the chiroprator i was feeling better so i went back to work. I began feeling sharp pains in my back and major weakness in my legs today I have been diagnosed with tarlov cysts on my sacrum. I have no idea what to expect and I’m worried. Prayers and advice on what to expect are greatly appreciated.

    • Lynda Rex says:

      I 1st want to say I’m sorry this happened to you. Please stop seeing the chiropractor I think this is aggravting the cyst and could be causing more pain & symptoms. Look over the internet & all the prior
      posts. I recommend you to try not to worry but to see your options & go for the best option for you. I also want to tell you what you can expect. Everything depends on where you live I feel. Larger cities have more options for Dr.’s. I have found out that the best thing to do when finding a Dr. is to do your research. Also your Insurance is a big factor. Please don’t feel like you are alone. Prayers are always with you, all effected and the Doctors.
      Start a log for all your questions for the Doctors. Keep a log all of your symptoms for the Doctors.
      Good luck! Feel free to contact me through this site for support.

      • Apologies, my comment should have been directed at Tara not Linda. Can you please describe your bladder symptoms? I was diagnosed with a tarlov cyst on the s2 nerve root measuring 7mm. I have been having pain after urination and pain after ejaculation for 3 months and I have been misdiagnosed numerous times. I also have bowel dysfunction in the sense that I have narrow and small stools from time to time. The only thing that correlates with my symptoms is the cyst and it’s location. All else on Mri is normal The prostate gland is normal. The urinary bladder is normal. The rectum is normal. Periprostatic soft tissues
        are normal. The neurovascular bundles are normal. The sacral plexus is normal. The sacrum is normal. Normal
        subcentimeter Tarlov cysts are noted involving the sacral roots. The L5-S1 and L4-5 discs are normal.
        The abdominal muscles are normal. No evidence of a rectus abdominus injury. Pubic symphysis is normal. Thanks.

  15. I’ve just been told I have a 1.5 cm by 1.8 cm Tarlov Cyst in my Sacral spine at the S 2-3 region. I’ve been having symptoms for the past 5 to 6 years (pain in the ‘tailbone’ area, sciatica down my left leg, pressure in both legs, pins and needles feeling in both feet, bladder and bowel issues, headaches, ringing in my ears and lower back pain. My Pain Management- Spine doctor doesn’t seem to attribute any of my symptoms to this cyst; although I have foraminal narrowing and two bulging discs at L 3-4 and L 4-5 with disc degeneration. I’m in constant pain… very depressing.

    • Lynda Rex says:

      I would recommend getting a second opinion. I have learned that older Dr.’s are not always keeping up with the latest, greatest techniques. Also do you research on the internet for Doctor’s. If you live in a big city you have better options. Depending on your insurance, you can make an appointment directly or get a referane from your primary care Doctor to the Doctor of your choice. You do not need to advise you spine/pain Dr. I would take a copy of your MRI. I would also consider the Dr.’s that speciality is in cysts. You can go Directly to one of these Dr.’s. If you are talking certain medicines for pain they can cause depression. Please be mindful of these medicines. Also I have tips on headaches get a mouth guard. The best ones are from your Dentist if you can afford them if not your drug store wshould have some. I went to my Dentist who advised that when you bite down hard due to pain this can cause headachs that I had. Ice is your best friend for pain. Put ice packs on your back, also on your feet or anywhere you have pain. I hope this helps and I feel that the larger the cysts get the more pain you feel. I hope these tips help and please don’t feel alone as there are quite a few people who have cysts. Take care and best of luck!

    • Hi Lynda, can you please describe your bladder symptoms? I was diagnosed with a tarlov cyst on the s2 nerve root measuring 7mm. I have been having pain after urination and pain after ejaculation for 3 months and I have been misdiagnosed numerous times. The only thing that correlates with my symptoms is the cyst and it’s location. Thanks.

  16. Jean Hammock says:

    Hello, I just had my MRI 3/8/16 and it showed not a whole lot had changed, still disc degenerative disease, bulging disc L-4, L-5. Also L-5 -S-1. Mild loss of disc height from L3, – L4 through L5- S1 ( WENT FROM 5’5″ to 5’4″ ) then my doctor told me that I have arthritis in my lower vertebrae’s. But she never mentioned this ( small right S2 Tarlov cyst is noted ) what does that mean? Who should I speak to? I looked up symptoms and that could explain at least half of my symptoms! My last MRI before this one was 5/2009

    • Lynda Rex says:

      You said your cyst is small. The biggest problem with these cysts is when they block or compress the nerve. You have more than just the cyst to consider. I would talk over your problems with you family practice Dr. and your family. I think
      you need to determine with them what is the worst problem & google Tarlov Cysts. Tell the Family Dr. what you saw on line maybe your Dr. will also research this & decide the best option. Your doctors know your age, medical history best. You must advocate for your best interests
      if you think the Dr. doesn’t listen to you. Dr. F Feingbaum is in Dallas and that is where I live so my choice was easy. He also has good explanations of what these cysts do
      & other question can be covered on line. Don’t feel alone feel alone. We all feel your pain. Take care and best of luck!

  17. Who are the three surgeons who perform this surgery on Tarlov cysts? Are there truly only three of them currently? Is t true the only procedure is to clip/remove the cyst , pack the area with body filler e.g. Muscle/fat, and fuse the affected vertebra? What if they catch it sooner?

  18. Hi. I have Perinural cysts and its paining while Sitting, sleeping and walking making my life miserable. Plz give me opinion to get relieved from this

    • Lynda Rex says:

      Ice packs on your lower back, & where ever you have pain. When doing anything take breaks about every 10 minutes. Get wedge shaped pillow to sit on. Think about see Dr. Feingenbaum in Dallas. Good Luck!

  19. I’m in Dallas and have pain from Tarlov cysts and have thought about seeing this Dr also. My back Dr seems to think it may not help but its worth a try, right? I fell and severed my quad tendon and after numerous surgeries and being in leg casts, I developed this also. As if one problem with walking wasnt enough.

  20. Doreen Harris says:

    Does anyone have pain when you sit?? Even on a soft couch, when I sit I get a sharp pain.

    • Doreen,
      I think we all have pain when sitting/standing/walking etc… Once you have this long enough you will know how the nerves travel down your legs & back up again. They have a triangle shaped pillow type
      seat that you can get to help with pain while sitting. My best suggestion for pain is ice packs.
      Good luck and remember you are not alone in this.

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